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csrich
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« on: October 28, 2009, 11:03:25 AM »

Back in the early 90's Cyberonics had a patient board. We met in Orlando for a weekend to try and help new pt's that were thinking of getting the VNS.
I was the 17th pt to have it done, 1st person in the 2nd study group. My seizures were controled for the first 12 months but the battery died and it took awhile to get a new one. After I got my replacement genarator, my seizures didn't decrease, but the duration and intensity went down. My sz's went from 5-8 minutes a peice to mostly under 30 seconds and I was pretty well awake during the seizures.
In 2002 I had the VNS rememoved after brain surgery.
I am reading a lot of bad things about Cyberonics.... They were great when I was a pt. Have the staff changed? It was nice to beable to call them up and everyone knew who you were.
Would love to get in touch with the orginal study pt's.

Chris
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« Reply #1 on: October 29, 2009, 01:43:01 AM »

:D HI Chris!  Thanks for your post and  :Welcome: to the VNS Message Board!  I encourage you to become a registered Member so you can take full advantage to what the board has to offer.  Your experiences and input is valuable!

Glad to hear you had success with VNS.  It is nice to hear a good outcome.  How are you doing now post VNS and brain surgery?

As far as Cyberonics goes, well, the staff has changed incredibly.  They have had issues with the Center for Medicaid and Medicare Services (CMS), and since CMS issued a non-coverage determination in 2007 for use of VNS in the indication of depression, insurance companies followed that decission, and most generally VNS is not covered.  In return, that decreased the cash flow to Cyberonics, so lay offs occurred, etc.

Then to add the fact that VNS is a money maker, there are people that really don't give a rats behind about the patient, so that adds to Cyberonics having an awful name.  Many patients have found once they were implanted, Cyberonics was done with them, especially if something went wrong.  Study participants have been treated well by Cyberonics because they were the "guinnea pigs", and the outcome would make or break Cyberonics.  It is truly a shame that having good medical care and money all go in the same sentance these days.

Looking forward to hearing from you again.  Take care!
B)
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
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